This has helped us so much, both when Lila was non-verbal and now that she is semi-verbal. I never want the teacher to go into the situation blind, and I want to give them both the best opportunity possible to start the year with positive interactions. I left some of our information in there just so you can get an idea of what kinds of things may go under that header. I hope it helps some of you – lots of love to you and your beautiful families!

All About Me

My name is:

My friends and family call me:

This is who lives with me at home:

These are the therapists and doctors who support me and my family and how to reach them:

Therapist:

Speech Path/Behavioral Therapy:

Pediatrician:

Neuropsychologist:

These are other family, friends, and supports that are special to my family and when my family or I usually see them:

I don’t usually post about any of the challenges, but wanted to offer a little glimpse into the autism family life for those who don’t experience it: Bath time has become extremely difficult. Lila hears the water running, and her anxiety goes from zero to one hundred (within a split second) – she screams and appears completely overwhelmed.

I want more than anything to be able to ask her WHY she is so upset – what’s wrong, baby? So I can change it. So I can ask – but she can’t tell me.

This week while mid-meltdown, she grabbed my face in her little hands, looked me in the eyes, and repeated slowly and deliberately. “Ah-Yay”……”Ah-Yay!”…… Momma, “AH-YAY!!!” I have absolutely no idea.

Maybe it’s what is making bath so challenging for her, and she’s desperately trying to tell me. “Ah-Yay!”. I started to cry. I always tell her I’m so sorry – that one day we will get there – I promise. It’s the tiny moments like that that absolutely break my heart. As always we keep working – we’re warriors, all three of us

That’s it folks. It may not look like much to an outsider but it was incredible.
The longest verbal string I’ve ever heard from her. The good Lord knows that neither patience nor manners are her strong suit – she said “Mah, Goots, Yets Go!”, which in Lila speak is “Milk, Juice, Let’s Go!” and it was spoken to me as I headed into the kitchen after she had requested a drink

At 15 months of age we started floor-time/play therapy at home with Lila, under the tutelage of her SoonerStart therapist – Janet. We worked every day for years on joint attention, fine motor skills, speech, turn-taking, picture cards, anything that involved effective communication between each other.

Well – I in particular ended up painting myself into a corner. Bill had much more common sense with this than I did lol Communication – that was the key, right? SHOW me what you want, and I’ll do it! Anything – give me anything and I’ll do it. Desperation lent itself to shelving any reservations I had about performing any of these requests.

Long story short I ended up here:

Oh, you want Mommy to….:

Get out 5 foods for you mini-buffet style, then blow bubbles over you while you play on the iPad?

Jump on the trampoline with you for hours and hours?

Give you a piggy-back ride 100 times in a row?

And I did. At the time – she was communicating, and I was too scared to put limitations on it at that point. So I did whatever she asked whenever she asked for the most part – unless it put her in some sort of danger – that was my ONLY caveat.

Looking back I see how ridiculous this must all look now – but I know where we came from. From a place with zero communication – I thought we had lost her. Therefore, I was beyond desperate. I also worried that she had/has no siblings or friends, and I think I was at least in some part trying to fill that void for her as well (but that’s my issue, not hers).

NOW is the time to set those limits. If we don’t do it while she’s young – all of us will be in a world of trouble, and I know that. She’s extremely intelligent – and her self-soothing skills have improved dramatically. Therefore, I’ve had to start saying “no” more often. Sometimes with a visual of when it will be available again, but sometimes (like while I’m working from home) – the answer is just “no”. She’s learning to be OK with that. I get her what I know she needs to calm down. It may take a while, but she can do it. That’s an important life skill, folks.

Limit-setting – that’s what we’re working on right now, and just flat-out saying “no” for things that are just completely unacceptable (ie physically trying to hurt the cats/puppy). I’ve always been good at the sensitive side of parenting – and working on plenty of floor-time/play therapies with Lila, so now I’M working on setting more limits for her, saying no, and having her take more responsibility around the house for things I know she can do. She throws her chips on the floor – she can pick them up. She doesn’t like it – but she knows better, and she can do it.

She’s a brilliant little girl – and I talk all the time about no limits for her just because she’s autistic, etc. I wouldn’t let a neuro-typical kid get away with this stuff, so I can’t let her get away with it either. So that’s where we’re at on that – we’re working on it, and as always we’ll get through it together!

I’ve learned to always work with what you have – and to think outside the box (thanks, Janet!).

I’ve been working on (but haven’t been able to successfully negotiate) a time where we sit in the playroom and play with actual toys. So like most things related to autism, I feel it’s more beneficial for both of us if we meet halfway. So I’ve chosen to use her affinity for the trampoline time as our new “therapy” time.

We both play on the trampoline a LOT – hours a day, every day. I always verbalize what we’re doing (i.e. saying “jump!” every time we jump together) because we’ve been doing floor-time/play therapy with her since she was 15 months old and that’s just how we roll.

Instead of just verbalizing what’s going on and singing, we worked on a couple of new things to force her just a little bit out of her comfort zone:

1.) “Do you want to…..”

Using WHAT we’re doing to work on the concept of “yes” or “no”. I say a few silly suggestions (which she thinks is funny), then go for the actual activity.

So I say, “Do you want to swim? Noooo (exaggerated and silly sounding – scripted that off one of her favorite apps and she loves it). Fly? Noooo…. Jump? – YES! Let’s JUMP! So we’re basically just working on the play-time activities we’ve already been doing – then trying to work the concept of “yes” and “no” into the framework of that activity. She thinks this is pretty silly but she’s learning AND having a good time! (And isn’t that always the goal?)

2.) Verbal Choices….

We’re starting to push the boundary with the spoken word just a bit. We obviously know her better than anyone, so it’s easier to gauge what stretches her vs. what would cause her to get upset (which obviously ruins the play and defeats the purpose of play therapy).

So I say, “Do you want to (a) jump or (b) march?” Every time she comes to me I ask her to choose. Sometimes I mix it up with spin – but she knows each of these words well and I have heard her say them clearly enough that I can differentiate between the two. I think it’s important that I chose words/actions that she’s familiar with for this exercise – it allows me to work with her withOUT her anxiety level skyrocketing. She’s started (at times) just coming up to me now and saying “Jump!”, “March”, etc. with no prompting from me as a result!

We’re about to head into the holidays, TeamQuirky – please remember to throw conventionality out the window and do what works for you and YOUR family! Lots of love to all of you and your beautiful families.

Current Strengths:

Expressing herself verbally more and more (I’ve even heard two word phrases a few times like “Mommy, yay!”.

Actually ate some noodles and diced tomatoes! Making in bulk for her this weekend – so excited!

We did Halloween our own way and she had a GREAT time.

Current Challenges:

She hasn’t been feeling well – and that causes her behavior to become much more challenging.

Bath time – regression there (again) – no clue why – building that routine back up using some of her current favorite songs from Sesame Street & Nursery Rhymes while we do bath.

The puppy (Millie!) – we found out that for the first time in her life, she likes dogs! But she does not really like the new puppy – the nipping and jumping on her, etc. Things will only get better as Millie continues to get bigger, we’ll get there!

It’s not your stereotypical perfect picture, but I love this so much. Lila took me by the hand to the back door last night around 6:50pm. The sun was almost set, she looked out the window and knew it was almost dark. I said “I think we can go out ONE last time, don’t you?”. She ran to the back door and we headed outside. We jumped on the trampoline until past dark. Her pure JOY in those moments is palpable, overwhelming, and one of my very favorite things on the planet. I’m so lucky to be this one’s Mommy. I tell her all the time, but if I could only choose one child in the whole universe, I would choose her – just as she is – every single time. So unbelievably blessed 💖

Last year I did an in-depth book for Lila’s teachers/therapists last year since it was her first year of pre-K (thank you for the form, Janet!). For those of you who want to do one and need a starting place, I’m pasting a clean copy of the basic contents here:

All About Me

My name is:

My friends and family call me:

This is who lives with me at home:

These are the therapists and doctors who support me and my family and how to reach them:

These are other family, friends, and supports that are special to my family and when my family or I usually see them:

Here are some things that I REALLY enjoy:

Here is how you know I’m happy:

Here are some things that are challenging for me to do:

Here are some things that I wish didn’t ever have to happen because I dislike them so much:

Here’s what I do when I’m not happy about something:

These are the ways in which I communicate to others what I’m thinking, feeling, wanting, and don’t want:

These are the ways I get around my environment and how I move and use my fingers and hands:

These are the ways I’m able to eat, and what foods I like and don’t like:

This is my experience being around other children my age and what usually happens in those settings:

This is how people who care for me let me know what behavior is expected of me and how they handle it when I’m misbehaving:

This is how I best calm down when I am upset:

These are some things that my family would like to see me learn over the next year:

This is what you can expect from my family at home when working with me:

This is what my family would like as far as communication about what I am learning and how I am doing at school: